Misdiagnosed after 10 years!!

If this is indeed true , i dont have ms, then that is GREAT! . Yes, I have had all those tests. I have only brain lesions . I have asked why does my right eye hurt from time to time. Some say its optic neuritis, some say it isnt. . My spinal cord of neck and thoracic shows no lesions. And my cerebrospinal fluid does not have O bands, only elevated protein. Mu latest neurologist says the cerebral spine fluid doesnt have to hsve the O bands for diagnosis. I hsve friends with a clear cerebral fluid who hsve MS and friends with much pain. Pain is recognized as a MS symptom in the USA.. I've had that weird eye test. I do have brisk reflexes. And yes, all the diagnostic tests for MS are exhausting. Just seems crazy these doctors csnt tell me whsts wrong with me. Ive been tested for EVERYTHING, blood work. It seems there's either too much or not enough information about MS and doctors don't know bwhat to do. Thanks fot your input

I'm so sorry of your situation. This is a very strange case indeed.

I'm wondering what Neurologists want in order to definitely release a clear diagnosis. I can understand your frustration, added to all your adverse symptoms, this is very bad .

But I know one thing. You have to attempt to stop grieve for the incompetence of many physicians around you. This painful emotional state could compromise your health even more.

Since you are rightly disappointed by your neurologist, have you tried to further searching a GOOD specialist , maybe outside of the allopathic medicine, like a naturopath or a health practicer?

I know a few in your country, some of them have had MS and now are symptoms-free. Maybe they can help you to relieve your sufferings. They treat a lot of pathologies, and they tend to cure the entire person and not the desease, so you have not to be worried about the exact name of your illness, such as Sclerosis or other....The important thing is to earn again a good health , isn't it?

I wish you all the best.

F.

 

surely, if people with ms were symptom free after having some kind of naturopathic cure-all. it would be HUGE news, worldwide?! and not knowing what condition is blighting your life is torturous and makes it pretty much impossible to have 'good health'. 

sorry, but ask anyone with a long term or incureable condition how they feel about anyone blithely saying 'oh, that, there's a simple cure...' and the usual answer is INFURIATED!

This is a bitter answer indeed Wendy, and I'm so sorry to have provoked such reaction. Apologise for this .

But, If official medicine fails there are other source to get better too. I would try to inform about these alternatives. For instance Iridology could give to Carolina a picture of her current state in a non-invasive way. It would be a non-official but credible diagnosis...I guess It would be a big step forward.

Personally I've received a lot of medical advice or ideas in 30 years of MS, and I always filtered them.

They (often friends) gave me their advice because they were worried about me. They showed me altruism. Most neurologists don't have the same feelings. It is worth getting information about their advice. This is a more constructive way to proceed, even if you will not follow the cure, because everyone is free to choose his way.

I'm not so blithe as you probably think, I'm on suffering right now and facing many MS symptoms, but I think to be well informed in a bunch of alternative cure and I'm trying those. They are not so simple, because they are actually 'healing protocols' and require personal engagement and constant effort.

Some people respond better than others to these cures, because we are all different , but I know many patients have improved their health and some even saved their life fighting this way some lethal deseases like cancer...there, where the official medicine had failed.

So my message to Carolina must be positive: don't give up, look for other ways, don't lose your hope, inform yourself , don't stop fight. Official medicine has not all the answers yet, but do not let it down.

F.

 

Thank you, im open to ANYTHING at this point. And im not and cant give up , because its so greatly affecting my life, robbing me of joy I used to have.

federico, i don't think that you understand the difference between bitternes and incredulity. it's all well and good to tell of people having miraculous results from following various types of 'naturopathic' treatments, that you actually (again, BLITHELY)  say, quote:

'Some people respond better than others to these cures, because we are all different , but I know many patients have improved their health and some even SAVED THEIR LIFE fighting this way some lethal deseases like cancer...there, where the official medicine had failed.'

carolina is dealing with a big health issue, and, basically, suggesting that a person is 'free' to follow or not follow different 'unofficial' treatments leads me to the question: how much will 'free' cost  her exactly?!  

carolina, be wary of unofficial treatments and any one bandying the word 'cure' around. should it turn out that you do have ms,  remember, there is, currently, no cure for ms. i would urge anyone going through the awful mill of having undiagnosed, ongoing health problems to find some relaxation exercises that work for them, to help reduce stress levels. just don't pay for them, find them (actually) free, online.

carolina, i sincerely hope that you do, in fact, have something curable, rather than ms, 

Hello Federico can you please provide me with the names of the doctors that can help with my cousins MS please.

You are exactly right. The doctors are scared of lawsuits. There is a very informative article where a university did a study in 2012 and discovered that there are neurologists that feel a patient may not have MS but won't say anything due to the psychological effects how it would harm the patients. The study also found out how much the insurance companies and medicare was paying out for ms treatments when the person didnt even have ms. Also the criteria for diagnosing ms was changed in 2012. It is a very hard thing to diagnose. And sime doctors still think osin is not a symptom of ms but like you I have horrible chronic pain in my legs , feet and ankles. Im not 100% sure that I don't have ms because of all of my symptoms, and after 6 months I still don't have a diagnosis of what is wrong with my body. GREAT if I dont have ms but whst is it that I do have?.

Hi carolinagirl1

I went undiagnosed, by my treating Neurologist, for over 6 years. My MRI showed numerous lesions in my brain, as well as many other symptoms. He told me "not to worry about all the spots, in my brain, umless I felt different."

I can't begin to tell you how many times I told him I DID feel different and was having symptoms I had never had before. All to no avail. He didn't listen!!

In Jan. 2009 a spine specialists, who was treating me for something else called me in to his office. He asked me if I had ever been diagnosed with MS? Also, if I had a Neurologist? He showed me the brain MRI'S, that he had done on me and that I DID have MS! He then sent all the medical tests, documents, to my Neurologist, as well as gave me the CD Rom, to bring to my next appt with the Neurologist.

My Neurologist still refused to discuss MS with me, let alone give me a dx.

March 2015 I ended up in the ER, with symptoms I had never experienced. After tests were done the Chief of Staff, of the hospital came in and talked with me. He explained that I HAD MS and my neurological system was trying to shut down. Also asked did I have a Neurologist? That I needed to be seen within 1-3 days, by my Neurologist!!

Thankfully, I had just changed Neurologist.

I was furious, that I was allowed to suffer and go undiagnosed, by the Neurologist that I had for several years. Also untreated!!

If possible try to find a new Neurologist, who specializes in MS.

I don't know if you have any other autoimmune disease (s)?

Most times, if you have one then you will probably end up with another.

Try seeing a Rheumatologist, if possible. I think you may possibly have better luck, with a Rheumu, as well as getting a proper diagnosis. I'm curious to know, if any type of RA's are in your family? Have you ever had a HLA B27 test done??

Good luck!

I find it's the "not knowing" that's worse, than having a definitive diagnosis.

Hi Wendy i have been messed around since 1996 last weeek i finally got an dmission i have myelin damge in the brain but they don't know why or how etc. Now this admission did not  come  from a neurologist but some working in a trama departmenr i had gone to see about an MRI on my neck to see if  wear and tear on  the disc in my neck was gettng worse. My problem is similar to people here damge in the brain but a clear lumber puncture. to add to this i had 3 different nuerlogist  in two years none of them spotted i had suffered a TIA/mini stroke.  The  second one left a note for the last one i think basically saying it was all phycologial  and i needed to see a shrink. none the last one failed to mention  the disc disease. The chap a the trama centre could see the jerky movements whch  i was pleased about because people quite cleary think im at it. There has been a lot of stress for me recently im  losing weight. I keep enidng up on the floor. if i turn the wrong way or open dooors etc with my left hand. My bigeest problem is thump or pluse in the bottom of my back it goes up and down my spine and in my head bit like a boat when its rough im now shaking on the left side  and  buildings bounce up and down. right hand spasam this  has happened in my left foot. big thing for me at the moment is the burning sensation last week i was fozen having got cold   and my arms felt like they were burning at the same time.

Hi Carolinagirl,

I was also just undiagnosed with MS after 11 years.  I am mad, sad, angry, upset, depressed and mad at the world right now.  Yes, I am happy that I don't have MS, that part is great news.  But I lost 11 years of my life, a husband, a job due to discrimination, friends, time sitting at home waiting for another relapse to happen.  It took a long time to come to terms with my diagnosis and the fact that I had to do shots every other day for 11 years.  The damage it has done to my body, the damage it has done to my mind is severe.  Everyone is like OMG that is such great news and they just get to go on with their lives while I now get to go on trying to figure out how to live my life as a normal non sick person.  They say that my illness will never have a label.  It may have been a fluke attack with no explanation 11 years ago.  My test results on my LP got mixed up and are missing, 11 years ago I was told they were positive, but I just had another one and they are now negative for O Bands.  The specialist said if they were present 11 years ago they would be present now.  

I don't want to be sick, but it is honestly the only thing I know.  I am off the Betaseron and a lot of my symptoms are gone, I feel normal again.  This has rocked my world and I am having an awful time dealing with it.  

So long story short I understand the agony you are going through with the misdiagnosis part. It is not just great news, I have read it is harder to receive than the actual diagnosis.  

I am sorry I can't be of help with the other.  Have you tried going gluten free?  My pain management doctor has said that doing a 10 day fruit and vegetable only diet lets the stomach shed its layer.  Then slowly introduce proteins back.  It is supposed to help with pain and inflammation greatly.  It sounds awful though, HAHA.   Gluten and Dairy are the biggest causes of inflammation in the body.  

I  have stopped eating bread and felt so much better for a whle at least. I was told just recenlty  seeking  a second aopioion was a waste of time i have had all the tests Its not juch fun but as least im not being  pumped wiht god knows what inot my body and reamin slim whh  for me is so important.

I'm so sorry your going through this. What are your symptoms?